Had a bad day yesterday. I've had swollen lymphs behind my jaw/ear that got worse over a couple of days until it was so bad I couldn't turn my head or sleep properly. Went to bed feeling OK other than the soreness. A few hours later I was awake with a massive headache and starting vomiting every hour for 4 hours. The nausea started to go away after that but I couldn't get to sleep properly for about 20hrs event though I was exhausted.

Anyway, had a good sleep last night and feel pretty good this morning.

Just wondering if you think this was lupus or if I have caught an infection because I am on immunosuppressive meds.

8 Replies

Probably infection but who knows , I often get bouts of vomiting and I have a lot of diarrhoea which is down to Mycophenolate I have been told . I think with lupus the illness and the awful medication we have to take is bound to make us feel sick every so often could be our bodies trying to get rid of all the poison's we take i don't know x

It is so hard to know whether our symptoms are flare or infection. If yours continue it would be a good idea for your GP to check you and do a blood test. If CRP is high then it's an infection , if not then a flare or Myco!. Hope that's helpful and your better soon. X

Difficult to say, it could have been 24hr virus. I sometimes get swelling around the ears/jaw, usually when I'm tired which goes after a good sleep. If you start to feel ill again best to check with GP that it isn't anything nasty going on.

How miserable for you, Emily00. I'm afraid I have no idea what it is! Can you do some basic observations like your pulse and temp? I'm not even sure if this will help with working out what the problem is now, but maybe if you build up a record of obs over a longer time, you can get a clearer idea of how you tend to react with a flare versus what an infection tends to look like????

Meanwhile, you know the drill - keep drinking water to prevent dehydration, wash your hands to stop spreading bugs, go to the GP if you are worried....the usual stuff!

Could be both; I find infection sets off my inflammatory symptoms and it is a case of taking it easy and listening to my body about diet, exercise, rest - just about everything.

Although I take no drugs now, I know my body is still clearing the massive toxicity of all the drugs I have taken in the past most of which never helped or made matters worse - it takes years to clear it all out of the body, if ever.

I had 2 teeth out just over a week ago and have been so poorly. They had long roots and I suspect the extraction cracked either my top jaw bone or one in my nose as I felt something go in my nose at the time and then afterwards my nose and lips were so swollen that I thought the skin was going to burst. I am slowly improving, but it has been very painful and slow with now having a viral infection in my lips, my dentist says.

The infection is limiting and draining my energy, but hopefully with good food and plenty of sleep it will improve.

We are more susceptible to infections, I believe, with immune system problems and then our bodies seem to go into over-drive and complete imbalance, it seems, from my experience like it doesn't know what to do first. I do my best not to worry and I keep saying the affirmations 'My body can right itself' over and over again - like hypnotising it to do the right thing and HEAL!

We would encourage you to visit your GP surgery if you believe you could have an infection. They will be able to advise as to whether this could be a side-effect of your treatment or due to any other causes.

Patients who take immunosuppressive treatments are advised to contact their doctor at the first sign of infection.

We also have an some information on lupus medications in the following leaflet, available to download or request on our website, which you might find useful lupusuk.org.uk/wp-content/u...

thanks so much for your replies! it really is helpful to know other peoples experience. Feeling fine now and all the swelling has gone down, been trying to contact my rheumy since Friday (she asked me to call to check my bloodtest results) but no luck yet argh! Hopefully I can get through today